Mom appeals ruling on terminally ill babyIf judge's order stands, a hospital could take the boy off life support

LEIGH HOPPER, Copyright 2005 Houston Chronicle |
February 17, 2005

Doctors could remove life support from a baby boy born with a fatal form of dwarfism as early as next week if an appellate court upholds a Harris County Probate Court judge's groundbreaking decision to let the hospital determine the infant's fate.

In a last-minute legal maneuver Wednesday, the lawyer representing the baby's mother filed an appeal in the 1st Court of Appeals. The court suspended Judge William C. McCulloch's ruling made earlier in the day and reinstated a temporary restraining order that prevents Texas Children's Hospital from shutting off the ventilator keeping the infant alive.

The case will be heard by Chief Justice Sherry Radack and Justices Laura Carter Higley and Jane Bland at 11 a.m. Tuesday — three days shy of the baby's five-month birthday. The rapid turnaround indicates the appellate court doesn't want to prolong the conflict between the hospital, which believes continuing treatment is inhumane, and the infant's mother, Wanda Hudson, who disputes the doctors' diagnosis.

"If they had given my client due process, a fair hearing, we would have had this over a long time ago," said Hudson's attorney, Mario Caballero.

Texas Children's said it is paying Hudson's legal fees, to ensure she and her baby have legal representation. Hudson hired Caballero after leaving several messages with lawyers listed with a referral service. Caballero is the only one who returned her calls, Hudson said.

McCulloch's ruling, if it stands, has the potential to make history, say bioethicists, because no U.S. judge has ever decided in favor of discontinuing life support on a living infant, although they have upheld hospital decisions in court after the baby has died.

"I am no longer prohibiting the hospital from deciding to remove life support," said McCulloch. "I am not saying they can or can't, but I am saying they are not restrained."

Groundbreaking decision

Boston College ethicist John J. Paris, a Jesuit priest who has written extensively on the subject, said the decision is "the first time in the United States. You've got a good, helpful law in Texas. To insist the child had to endure this and the hospital had to provide treatment that made no medical or physical sense would have been a tremendously awful thing."

Hudson's baby, Sun, was born Sept. 25 at St. Luke's Episcopal Hospital and immediately transferred to Texas Children's Hospital, where he has been cared for ever since.

He was put on a ventilator to help him breathe, and doctors diagnosed him with thanatophoric dysplasia, a severe genetic deformity characterized by a tiny rib cage, small lungs, short arms and legs.

Most babies with the condition, often diagnosed in the womb, are stillborn or die a few hours after birth.

Those who survive the newborn period do not live to adulthood, experts said. Unconscious and sedated for comfort, Sun does not wiggle or open his eyes, hospital officials said.

Although patients on ventilator support may live for years, that would not be the case with Sun, experts said.

Because of his small rib cage, his lungs cannot expand to sustain his body and he will be slowly starved of oxygen.

Texas Children's doctors have said they believed "it was immoral to subject a terminally ill child to unnecessary life-sustaining medical procedures."

Provisions for doctors

Texas law allows doctors and hospitals to make some decisions involving life support, even against family wishes. The law requires a hospital's ethics committee to approve a doctor's recommendation to end life support if the patient's family disagrees.

The hospital must wait 10 days before shutting off life support so the patient can be transferred to another hospital, if the family desires.

Lawyers for Texas Children's said they contacted 40 facilities with neonatal intensive care units but none was willing to accept Sun.

Caballero argued that finding another facility was moot because moving Sun would violate federal rules that require doctors to stabilize patients needing emergency treatment before transferring them elsewhere. Caballero also said the judge denied Hudson due process when he quashed subpoenas requesting Sun's doctors, who submitted affidavits regarding the baby's prognosis, to testify in person.

McCulloch dismissed both arguments.

Caballero also asked the judge to recuse himself because of statements he made "with no basis in the court record." At a hearing last week, the judge remarked that he wanted the case to move along because "I am concerned about the baby. I understand the baby is in significant pain."

"I appealed the decision of the judge to refuse to recuse himself," Caballero said Wednesday night. "And the way he did it. He should have referred to another judge. The rules require the judge grant the motion or refer to another judge. He cannot decide himself."

A mother's struggles

After Wednesday's ruling, Hudson, 33, appeared not to understand the judge's decision or its implications.

"What exactly is your ruling?" she asked. "My parents will want to know."

Hudson said she spent three days in a psychiatric hospital after the delivery because doctors at St. Luke's were alarmed about statements she was making about her baby being the human embodiment of the sun.

Because of concerns about the mother's mental competence, a Texas Children's spokeswoman said, the hospital encouraged court involvement and offered to cover Hudson's reasonable attorney fees.

During the three hearings to determine her baby's fate, Hudson interrupted the proceedings with rambling outbursts. She talked about how she communicates telepathically with her son, but also about the painful experience of fighting for his life.

"I'm going through hell right now," she said. When she first laid eyes on her baby, she said, she saw he had a large head, small ears and small arms and legs, but "I looked beyond that" and convinced herself that he would grow.

In an interview after the hearing, Hudson refused to consider questions about her baby's impending death, saying she didn't believe in death and dying.